A Story Twenty-Five Years in the Making
The year was 1995, and Maria Frangella was a 27-year-old New Jersey native. A young woman looking forward to getting married to her future husband and best friend. However, Maria was suffering from rectal bleeding, constipation, and bowel issues. She had all the symptoms of Colon Cancer but she didn’t know it yet. She went to numerous doctors, starting with her gynecologist who said she had hemorrhoids, but never gave her a rectal exam. Next up was her internist who told her to take stool softeners and if it didn’t go away to call him back.
Throughout the process, Maria’s fiancé kept checking in with her. “He would ask me if I was bleeding,” recalls Maria. “I was so embarrassed. Sometimes I would lie and say no, and other times I would admit there was a problem. He pushed me to call my doctor’s office, and when I did, they explained it away as my hemorrhoids that had burst.”
For nine months, Maria continued to face these symptoms. She was finally referred to a gastroenterologist. At 27, Maria had no idea what kind of doctor that was. When they sat down to talk, and Maria mentioned she was planning her wedding, the doctor immediately decided that the stress and anxiety were causing her to have Colitis. He let her know that it was an easy fix, just some pills to clear up her symptoms. However, to be safe, he performed an exam.
During the exam, the gastroenterologist found a lot of blood and recommended she get a colonoscopy. Maria soon learned that a colonoscopy was an exam using a long, flexible tube inserted into the rectum to look for abnormalities in the large intestine and rectum. The tube is equipped with a tiny video camera that allows doctors to view the inside of the entire colon, rectum and anus.
During the colonoscopy, the doctor found a large tumor. After seeing the tumor, the doctor recommended that the couple cancel their wedding because it would be a long road. Maria’s mother had fought her own battle with cancer, so Maria received a referral from her mother’s physician, who turned out to be Dr. José G. Guillem, a colorectal cancer (CRC) specialist.
Finding a Solution
Dr. Guillem is now the Chief of the Division of Gastrointestinal Surgery in the Department of Surgery at UNC Chapel Hill. He has been a Colorectal Surgeon for more than 30 years, specializing in caring for people with primary and recurrent colon, rectal and anal cancer, early-age-of-onset (EAO) colorectal cancer, and hereditary CRC. At the time of Maria’s appointment, Dr. Guillem and his colleagues were beginning to see an increasing number of patients under the age of 40 suffering from CRC. However, in the early 1990s, the incidence of CRC was only 8.6 per 100,000 in the US (Ref Siegel et al JNCI 2017).
“Cancer is the big C-word,” says Maria. “When I had my appointment with Dr. Guillem, it was a full day of test after test, and I was scared through it all. When I sat down with Dr. Guillem, he made me feel comfortable and explained the entire process so I could be prepared for what was to come. He described to us that my cancer was in the lower rectum. He was calm and cool and made me feel like I had choices, but the reality was that the cancer was advanced and required urgent surgery. I was in his office for those tests on Wednesday, and the surgery was scheduled for the following Monday.”
Dr. Guillem walked Maria through the process. They were going to perform rectal cancer surgery to remove the tumor. After the surgery she was given a temporary ileostomy (bag) to allow for healing of her colon and rectum. During her recovery period, Maria had to carry around the ileostomy (bag). She learned how to empty it, clean it, and reattach it. While these bags are sometimes permanent, Maria’s was only temporary, lasting about ten months before being successfully removed.
She recalls waking up from the surgery very sore. “My surgery was the old-fashioned kind – remember this was more than 25 years ago – and medicine has made leaps and bounds for patients like me since then. I was cut from a little below my belly button all the way down. I had 45 stitches, and it was tough for me to lean back or lay down in bed and get up. When I got home, I needed two people to help me up the stairs and had at least six pillows behind me because I couldn’t bend.”
The Path to Recovery
Once Maria got home, the road to recovery wasn’t over. Maria’s stitches opened a little, because she was so active, so she had to clean her wound. She had to clean it with saline liquid and gauze, packing the wound, and covering it with gauze twice a day.
After the wound healed, Maria went through six months of chemotherapy and 28 straight days of radiation. She described the experience as “hell.” She did not want the treatment, but Dr. Guillem explained that Maria had Stage 3 rectal cancer and if by some chance a single cancer cell outside of the surgical area had been left behind, the chemo and radiation would help lower the odds that cancer would return.
Throughout the entire process, Maria met with Dr. Guillem weekly. He would give her an exam to check on her bowels and rectum. “He was always very concerned about how I was feeling,” says Maria. “During the entire exam, he would constantly check on me, to make sure he wasn’t hurting me. I really can’t say a bad thing about him because he had a way of making me feel like everything was fine.”
Finding Ways to Help Others
Maria did not get married in 1995 but instead, one year later, in August 1996, Maria was cancer-free and married her husband of 25 years. Her story, however, didn’t end there. Having gone through the experience at such a young age, Maria didn’t have other survivors to turn to for support. She felt very alone on her journey and decided she wanted to help others. She voiced her desire to help others to Dr. Guillem. He provided her name and contact information to other young patients suffering from similar diagnoses. Since then, she has spoken to countless other patients, sharing her story from beginning to end.
Maria then took it a step further. After her 10-year cancer celebration, Maria started to organize yearly fundraisers for Dr. Guillem to help support his ground-breaking research on early-onset colorectal cancer. When Maria was diagnosed with rectal cancer, it was less common for people under 40 to have the disease. However, over the years the numbers have increased. Currently, the incidence of CRC has increased from 8.6 per 100,000 in 1992 to 13.1 per 100,000 in 2016 driven largely by rectal cancers (Siegel et al JNCI 2017). Dr. Guillem noticed this trend and was amongst the first to research and publish on this topic with one of his early publications entitled, “Clustering of colorectal cancer in families of probands under 40 years of age.” Over the years, Dr. Guillem has published numerous papers, book chapters, and even edited a book entitled “Management of Hereditary CRC: A Multidisciplinary Approach”. His publications can be found by searching PubMed by author Guillem J or Guillem JG.
“My interest in early age of onset CRC began while I was a Surgical Resident,” recalls Dr. Guillem. “I was the Principal Investigator of the first controlled, prospective study to determine the relative risk of colorectal adenomas (polyps) in first-degree relatives of colorectal cancer patients. I was a founding member of the Collaborative Group of the Americas on Inherited Colorectal Cancer and the Principal Investigator on an NCI-sponsored study via the American College of Surgeons Oncology Group aimed at further understanding EAO and familial colorectal cancer. We were amongst the first to propose a more rapid and cost-effective means of identifying asymptomatic carriers as well as guiding risk-reducing surgeries. I plan to continue this line of research at UNC and collaborate with colleagues here and elsewhere. Our overriding goal will be to better understand the natural history of EAO CRC and Lynch Syndrome leading to interventions in early detection, management, and prevention. With the support of Maria, other grateful patients as well as other sources of funding, we continue to move medicine forward, searching for answers that can help save as well as improve the quality of life of our patients.”
Maria, along with volunteers, organized a yearly fundraiser dinner. A night of fun, filled with food and a silent auction that went towards Dr. Guillem’s research. These events also turned out to be a chance for patients, survivors, and their families to come together to connect, share stories, and feel like they were not alone. “I met and have spoken with many patients of Dr. Guillem’s over the years,” says Maria. “My favorite experience is when they came to the fundraisers, and we would have a table filled with patients and their families. Going through cancer, especially something like colorectal cancer so young can be very isolating and lonely. But at that table, surrounded by others who have experienced what you have, who have fought and won, creates friends that you can call for advice or just to listen. It’s been more than 25 years now since my diagnosis, but those people touched my life, and I hope I touched them in some way too.”
Today Maria continues to speak with patients, willing to be an open book about her experience and what life is like years later. She feels lucky that she met Dr. Guillem and that he helped her fight the disease and hopes that others find their way to him so that he can do the same for them.